IETF – Your Voice for Essential Tremor

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Discover the unknown and explore the many facets of essential tremor at the IETF’s free, first-ever ET Expo. On Feb. 21, 2015, ET patients and their family and friends from across the nation will join together to get a first-hand look at the ins and outs of essential tremor.

To build on the current educational seminar series platform, the IETF is expanding on these events to include a more comprehensive approach to meet the needs of patients in all aspects of ET in a new, dynamic setting. The first pilot for the expo format will be tested in Phoenix, AZ. If successful, ET expos will be strategically planned for different regions throughout the year.

“This type of event is new and exciting for us! We hope it sets a precedent for many larger, full-scale events to come in the future for our ET patients all throughout the country,” IETF Executive Director Catherine Rice said.

The IETF has teamed-up with world-class neurologists, movement disorders specialists and experts to host a day of discovery and education at this interactive expo. The day will feature presentations by doctors on the diagnostic process, treatment options, current research, coping tips and more. Hear from experts during a panel Q&A discussion following the presentations. Interactive exhibits from IETF partners will allow precipitants to get a hands-on approach to learning more about their condition and the resources available.

“The ET Expo isn’t just your ordinary health seminar. This is something that’s never been done before in the ET community. It’s destined to have a profound impact on our members while furthering the IETF’s mission,” Catherine said.

The ET Expo will take place at the Hyatt Regency Phoenix from 8 a.m. to 2 p.m. This expo is free, but pre-registration is required. Lunch will be provided and choices can be selected at registration. Parking will be validated. Donations welcomed. Register by calling toll-free 888.387.3667 or visit www.essentialtremor.org/seminars.

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When the fun and feasting of Thanksgiving is over, and two days of getting great shopping deals on Black Friday and Cyber Monday are behind you, there’s one more important day to remember, GivingTuesday. On December 2, we’re joining a national day of generosity, #GivingTuesday. It’s a day when you can make a big impact on essential tremor and on your friends, family and neighbors living with this life-altering condition.

With your help, we’ll raise funds to further research to find the cause of essential tremor that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET.

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Described as America’s next moonshot, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative is an NIH 12-year scientific plan focused on revolutionizing our understanding of the human brain. The IETF has joined major foundations, patient advocacy organizations, universities, and corporations, to align more than $240 million in research efforts to the initiative.

Since President Obama announced the Initiative in 2013, dozens of leading technology firms, academic institutions, scientists and other key contributors have made significant commitments to advancing brain research to better understand disorders such as Essential Tremor, Alzheimer’s and Parkinson’s diseases and more. Approximately $46 million in federal grants will support the research projects of over 100 investigators in 15 states and three countries. Stay up to date and spread the word on the BRAIN Initiative to uncover the mysteries of brain disorders.

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You have an opportunity to help us make even more of a difference for raising ET awareness. GreatNonprofits – a review site like TripAdvisor – is honoring highly reviewed nonprofits with their 2014 Top-Rated List. The GreatNonprofits Top-Rated Awards program is a lot like a people’s choice awards where volunteers, donors and people served by the great work of each and every nonprofit can cast their vote in the form of a review to express their appreciation and potentially win nonprofits a spot on the List.

Winning nonprofits that get added to the GreatNonprofits 2014 Top-Rated List will get exposure from media and corporate foundations nationwide. Plus winners will be added to the GreatNonprofits #GivingTuesday and Holiday Giving Guide and included in City Pages and Releases for Top-Cities, gaining even greater awareness for essential tremor.

To qualify for the 2014 Top-Rated Awards, we need to have at least 10, new positive (4 or 5 star reviews) from different users until Oct. 31, 2014. Help us raise visibility for essential tremor by posting a review of your experience with the IETF. It’s easy and only takes 3 minutes!

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There’s nothing worse than sitting in traffic when you’re late for work … until you spill hot coffee in your lap. But now there’s no reason to cry over spilled milk—or coffee. The Mighty Mug helps those struggling with hand tremor (or those who are just generally accident-prone) as the self-proclaimed “un-spillable” coffee cup.

The Mighty Mug is a travel or coffee cup that creates a powerful airlock when placed on a flat surface. A small amount of air is trapped beneath, creating a vacuum that locks the mug in place, preventing the possibility of accidental bumps and spills. When the mug is lifted, the pressure instantly stabilizes, allowing the airlock to release and lift easily. Perfect for those frustrated with shaky hand spills.

The Might Mug keeps your drink hot or cold, is dishwasher-safe, BPA-free and comes with a 100% guarantee policy. See how it works at TheMightyMug.com. Prices begin at $14.99 and are only available online or at Bed, Bath & Beyond. Let us know if the Mighty Mug helps with your ET.

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The LiftWare stabilizer comes standard with a spoon attachment, but now can do more. Don’t let hand tremor get in the way of eating salads, pasta, and foods you commonly eat with a fork and avoid the hassle of spilling soup with two new attachments for the LiftWare device. The new fork attachment has a deep-scooped profile to hold more food, and the new soup spoon attachment has been designed specifically with a deeper bowl to hold 65% more liquid than the standard spoon attachment. The device and new attachments allow you to focus less on how you are eating and more on the people you’re eating with. The new attachments are compatible with the LiftWare stabilizer handle (sold separately for $295). Attachments available exclusively at LiftLabsDesign.com for $19.95.

If you are unable to afford a LiftWare device and have essential tremor, Lift Labs has a donation program available. If you would like to be considered to receive a donated LiftWare device, please review and complete an application. Please note that the IETF does not pay for devices nor does it solicit donations to pay for devices. We simply assist them in distributing devices that have been donated.

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In partnership with Vanderbilt University Medical Center, join us for a free ET event in Nashville on the diagnosis process, treatment options, current research and more. This special event will also simulcast via a FREE LIVE WEBCAST nationwide for those who cannot attend in person.

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Unlock the mysteries of the brain and advocate for research through the Congressional Neuroscience Caucus. It is only through research that the causes, cure and ultimately prevention of neurological disorders, like ET, will be found.

What the Neuroscience Caucus does:

Sponsors briefings on research and findings

Collaborates with research organizations to build awareness

Distributes congressional information

Promotes legislation to advance neuroscience research

What YOU can do:
Reach out to your U.S. Representative and ask them to support the Neuroscience Caucus today. Find your Representative at: www.house.gov/representatives.

Together, our voice is powerful and together, we can drive change.

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Wish there was a support group in your area? Want to meet others living with ET in your community? We can help you make it happen! We are continually seeking ways to connect people with ET and to bring relevant information about ET to communities all over the nation. With the millions of people around the globe affected by essential tremor, it is likely there will be others in your community who are also seeking support. Do you know of a good location for a group? Are you great at connecting people? We would love to help you make a support group happen in your area. Call us today at 1-888-387-3667 or e-mail info@essentialtremor.org to learn how we can help you get started. Find more information about support groups on our website.

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The International Essential Tremor Foundation is pleased to award four students who are affected by essential tremor with $500 scholarships for the 2014-2015 academic year: Alyssa Mendelsohn from Baltimore, Md.; Kaleigh Knapp from Concord, N.C.; Paul Schoolman from Sykesville, Md.; and Sarah Kunz from Waverly, Minn.

“These four students exhibit impressive qualifications based on academic and extracurricular activities in their communities and will become outstanding, future leaders in helping create more awareness about essential tremor,” said Catherine Rice, Executive Director of the IETF.

IETF scholarships are awarded to qualified students of all ages who have been diagnosed with ET, to lessen the burden of higher education. The scholarship can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools) and are paid directly to the educational institution. For more information about the IETF scholarship program, please visit www.essentialtremor.org/about-the-ietf/scholarships.